WWYD re: gluten/breastmilk

[haren.13]

We had bloodwork done for Maya that came back positive for celiac disease. Gluten passes through breastmilk, so I have to make a decision:

* I should eliminate gluten from my diet because Maya is still breastfeeding
* I should not eliminate gluten from my diet because it exposes Charlotte to gluten, which has a protective effect
* My other options are to wean Maya (no) or to start Charlotte on solids (grains) early (no)

So no matter what I choose, it hurts someone, and I have no idea what the long term ramifications of any of the above choices will be Sad Ultimately I need to make this decision on my own, but I'm wondering if anyone has a great idea or can just offer input (like, what would you do).

I should add that under normal circumstances if for some reason I had to choose between weaning Maya or not for Charlotte's benefit, I would wean her (because Charlotte is still EBF). But, with the gut issues AND the IgA deficiency (another immune disease we found out about, that puts her at risk for upper respiratory and GI infections) I feel like I need to keep breastfeeding her because I think it's helping to protect her. She won't drink breastmilk from a cup so I can't even do gluten-free donor milk.

[Cullens_Girl]

tough call... from what I understand Celiacs is definitely hereditary so I see the pros/cons of both. If it were me I'd probably eliminate gluten from my own diet... your baby has already received quite a bit from you already and and eventually she'll be getting it again when she starts solids in a few months. I'm not an expert however. With all the illness going around plus her current medical conditions I believe keeping her on breastmilk for as long as possible outweighs the risks of your baby becoming intolerant to gluten as well.

[kjbrown92]

I guess I'm not understanding something here. Why not take gluten out of your own diet so that it's not in either of their diets? Why do you think it would be good for one of them? I don't think it's in any way necessary for anyone so I don't know why taking it out would be harmful for one of them. Am I missing something? How is gluten protective?

Mayahas celiac, and is how old?
Charlotte is how old?

[changingseasons]

I'm a little confused as well as to how gluten would be protective. Were you advised that it would help prevent celiac in the youngest? I hadn't heard that before. I know with allergies, there are some experts who believe that early small exposure will help kids avoid allergies later (although this is still pretty controversial.) But celiac is definitely not an allergy, so I would be really surprised if it worked the same way.

Also- from what I know about celiac, it's pretty easy to get "glutened" by cross-contamination (dishes, cookware, etc.), so I wouldn't feel comfortable having it in my house with a celiac child.

[momofmine]

I would absolutely take it out of my diet immediately.

[mamafish9]

Another vote for taking it out. I'm not sure of any protective effects for your youngest, either, but it sounds like it's a trade-off between known harm and possible good - in that case, it seems like acting on the known quantity makes sense. And I totally applaud your desire to keep bfing your older child to support her system through her immune issues. Go mama!

[luminesce]

There are several studies that indicate that breastfeeding is protective against celiac disease.

http://www.ajcn.org/cgi/content/abstract/75/5/914

What these studies do not point out however (well, maybe some did, I can't remember ) is whether or not the mother was still consuming gluten, or if it mattered. Breastfeeding is protective - regardless of all other factors.

In providing protective function of gastrointestinal system, human milk enhances immune function (Kelly & Coutts, 2000), stimulates maturation of the intestinal epithelium, and complements the protective character of the intestinal mucosa serving a barrier function (Newburg, 2005). Although the exact mechanisms involved have not been confirmed, the factors influencing the association between the prevention of autoimmune diseases and ingestion of human milk may include the high proportion of polyunsaturated fatty acids (Hanson et al., 2002) and the anti-inflammatory activity of human milk (Kelly & Coutts, 2000). The anti—inflammatory activity, possibly related to the factors present in human milk—including secretory IgA that prevents dietary antigen uptake—suppresses inflammatory immune responses that have deleterious potential (Kelly & Coutts, 2000). The secretory IgA in human milk protects the infant against microbes in the maternal gut and prevents microbes from attaching to the infant's intestinal mucosal surface (Hanson et al., 2003). Thus, the protective functions of human milk promote the growth and maintenance of an intact and healthy gastrointestinal system as well as augment the immune system in the developing infant.

So the benefit may be primarily breast milk not necessarily breast milk with gluten in it.

I would eliminate gluten from my diet and continue to breastfeed both. I'd also be wary about cross contamination with a celiac child and probably just have the whole family be gluten free. (That is what we are doing now, even though DS does not have a celiac gene and is likely just gluten intolerant.)

[deditus]

I think if someone in a family has celiac then there should be no gluten in the house.period.

[Ruthla]

Wait- where on EARTH did you hear that "gluten in breastmilk has a protective effect on the baby"? If she definitely has celiac, then she definitely has celiac. If she consumes gluten, ever, it will cause damage to her GI system (although a very tiny amount, very rarely, might not cause any noticable damage.)

Also remember that celiac disease is hereditary- which means that you and/or your DH may also have celiac disease. Cutting gluten out of your diet will definitely improve Charlotte's health, and it may improve your own health as well. Its' a win-win situation!

The only downsides to cutting out gluten are that it can be a hassle, you need to read labels carefully, and you may need to re-learn some cooking techniques- the transition itself isn't so easy and some GF foods are more expensive than their gluteny counterparts. But medically-nutritionally, there are only "plusses" to cutting gluten out of your family's diets.

I see that you also have a 2yo. I don't think there's any way to keep the 2yo from sharing with her baby sister- either by handing her food directly, or dropping it onto the floor where the baby might eat it later, crumbs getting into the baby's portion, etc. The only way to keep the baby's food gluten free (once she's old enough to crawl around and put things in her mouth, even if you don't intend to start solids yet) is to give the toddler gluten-free foods as well. DH maybe could keep his foods to himself and clean up properly (maybe!) but it's simply too much to expect of a 2yo.

[FairyRae]

I agree w/ all other posters--I would take gluten out of my diet and continue breastfeeding. It is NOT a necessary food for anyone, and I think often does more harm than good even in those who tolerate it. I think there are far greater benefits to continuing to nurse them both and dropping the gluten for everyone if necessary.

ETA: Why would you need to start your little one on grains early if you're not consuming gluten yourself? I haven't heard of that before...And there are lots of gluten free grains you can eat if you want to expose her to grains via breastmilk...

[WuWei]

Originally Posted by FairyRae

I agree w/ all other posters--I would take gluten out of my diet and continue breastfeeding. It is NOT a necessary food for anyone, and I think often does more harm than good even in those who tolerate it. I think there are far greater benefits to continuing to nurse them both and dropping the gluten for everyone if necessary.

:


Pat

[haren.13]

Thanks everyone Sorry it took me so long to get back here.

To clear something up, Maya (the 2 year old) has been diagnosed with celiac via bloodtest (not sure if we'll do the biopsy or not...meeting with the gastro on Monday); Charlotte (4 months old) has not been tested as she hasn't had gluten exposure via solids, so the bloodtest wouldn't be helpful. When I said I could start her on grains early it was for gluten exposure (I read that there is a sortof "critical window" between 4 and 6 months, to expose a suceptible baby to gluten...but I think early solids exposure, ESPECIALLY in a baby who has a family history of food intolerances, is a terrible idea). I don't know for sure about the gluten in breastmilk being helpful, but it is what I read:

"Breastfeeding a Child With Celiac Disease
Some mothers continue to breastfeed well into toddlerhood, at which point some children have already been diagnosed with celiac disease. Because gluten eaten by the mother can be passed on in her breastmilk, a mother who is nursing a baby or a toddler with confirmed celiac disease needs to maintain a gluten-free diet.

If neither the baby nor the mother has confirmed celiac disease, the mother should continue to eat gluten, even if there is a history of celiac disease in the family, because there is a chance that exposure to gluten in breast milk will actually help the baby to develop a normal immune response to gluten."

I think the plan (after talking with my husband) is to go totally gluten free as a household. I suspect that at least one of us has it as well based on what I've read. The downside of that is that we won't know if Charlotte has it (since she won't be eating it, we can't get her tested) but that is ok with me. We can just assume that she will be sensitive to it, as well. When she's older she can make the choice on her own whether she wants to trial it.

I hadn't even thought about the cross contamination thing ~ I'm gonna have to be scrubbing pans and cupboards and the like, because we have flour EVERYWHERE in our kitchen (I do a lot of baking Not so much anymore apparently...). Maybe I'll call those mighty maid ladies to do it for me cause that is one task I am NOT excited about :P

[ASusan]

I think you've made wise choices to maintain a GF household and to continue to breastfeeding both girls.

So sorry about the cleaning. Not sure I can be of help there.

[kjbrown92]

Wow, I'd never heard that before, and not sure how they would even know that. I didn't think celiac was really considered an "immune response". I thought it was considered an auto-immune disease. Hmmmm... not sure what to do with that information except keep it in the back of my mind.

I think you're making the right decision. Since you've been having gluten up to this point, then she HAS had exposure to it. While it's still fresh in your bloodstream though, you and your DH should have yourselves tested as well.

[deditus]

Originally Posted by haren.13

I think the plan (after talking with my husband) is to go totally gluten free as a household. I suspect that at least one of us has it as well based on what I've read. The downside of that is that we won't know if Charlotte has it (since she won't be eating it, we can't get her tested) but that is ok with me. We can just assume that she will be sensitive to it, as well. When she's older she can make the choice on her own whether she wants to trial it.

Charlotte most likely wouldn't have it yet - she would first of all need to have the genes making her susceptible to celiac disease and eating gluten or being exposed via bm and something that triggers it to be expressed - an infection, nutrient deficiencies, a traumatic event, etc. You have plenty of time to get her gene tested when she's older if you desire.

[jewellz]

Originally Posted by haren.13

Thanks everyone Sorry it took me so long to get back here.

I think the plan (after talking with my husband) is to go totally gluten free as a household. I suspect that at least one of us has it as well based on what I've read. The downside of that is that we won't know if Charlotte has it (since she won't be eating it, we can't get her tested) but that is ok with me. We can just assume that she will be sensitive to it, as well. When she's older she can make the choice on her own whether she wants to trial it.

We are a gluten free family, at least the kids and I-I suspect my hubby has it too but he won't change over. We were self diagnosed 2yrs ago. My 1st DD gets bratty, DS1 gets physical symptoms and DD2 was not that old because we started the diet before she was eating solid-so didn't know if she would react, but because it runs in the family, I didn't want to introduce her to gluten-she reacted when accidently glutened just like DD1 does-and DS2 is only 10 months old and has not and will not get gluten ever. I don't know if he has it and this babe in tummy and any future babies will not get gluten ever either as long as they live in my household.

But in your situation I would go GF immediately. The risk to Maya outweight the benefits that Charlotte would get from breastmilk if she doesn't have celiac but you never know if she has it or will end up with it especially since it does run in families-there are gene test you could do to tell you if you carry the gene for it but it won't tell you if you have it or may get it in the future.

[jewellz]

Originally Posted by deditus

Charlotte most likely wouldn't have it yet - she would first of all need to have the genes making her susceptible to celiac disease and eating gluten or being exposed via bm and something that triggers it to be expressed - an infection, nutrient deficiencies, a traumatic event, etc. You have plenty of time to get her gene tested when she's older if you desire.

I don't think that is true about the three things, there are people who do not have the gene but do have celiacs. I think the last two are true together but not all three and not always that way.

The only way we could get tested for the gene would go to genetic testing and so far no one in my insurace would help us do this and we can't afford the indepentant lab fees to do that. I wish we could and for my hubby to get tested but that prob won't happen.

[kjbrown92]

If you don't have the gene, you don't have celiac. But you could very probably have a gluten intolerance (like me, DS, and DD2 in my family).

[luminesce]

Originally Posted by haren.13

I hadn't even thought about the cross contamination thing ~ I'm gonna have to be scrubbing pans and cupboards and the like, because we have flour EVERYWHERE in our kitchen (I do a lot of baking Not so much anymore apparently...). Maybe I'll call those mighty maid ladies to do it for me cause that is one task I am NOT excited about :P

Cleaning it out is definitely a hassle. I packed up a billion pounds of flour, pasta, crackers, cookies, etc. and gave it all to my family. I did a lot of baking too and had flour in bulk in our pantry. It was a mess. Oh, and don't forget to replace the toaster.

DS (and DH, though he doesn't really want to acknowledge it) are both somewhat gluten intolerant. Neither I, nor DH have celiac genes but do have genes connected with gluten intolerance. I'm also sorta kicking myself in the butt for ordering two of the at-home Biocard celiac blood tests (for anti-transglutaminase antibodies) for DH and DS before we got the gene tests back. Now we don't need them and they expire in January.

As for baking, we're still doing a ton of it... it is just all experimental with lots of failures.

[luminesce]

Originally Posted by haren.13

"Breastfeeding a Child With Celiac Disease
If neither the baby nor the mother has confirmed celiac disease, the mother should continue to eat gluten, even if there is a history of celiac disease in the family, because there is a chance that exposure to gluten in breast milk will actually help the baby to develop a normal immune response to gluten."

I read one study that showed something similar but I can't find it quickly. I think the gist of it was an investigation into why breastfeeding protects against allergies, celiacs, etc. They were trying to link it to both the immune components of breast milk in conjuction with the exposure to the substance. In your case, though, for the health of your family, I think you made the right decision... better to go with the knowns, especially since others in the family may already be gluten intolerant/celiac.